I was diagnosed with type 1 narcolepsy – narcolepsy with cataplexy – in February 2017 after battling the disease for 20+ years misdiagnosed. The relief I felt after finally finding my medical home makes my Diagnosis Day second only to my wedding day as the happiest day of my life!
Narcolepsy is widely misunderstood and my severe, textbook case was missed by three neurologists and a medium-sized army of other specialists before I found my current neurologist in February 2017.
It is a debilitating neurological disease that can seriously impact a person’s quality of life. I can sleep for 12-17 hours a day only to wake up deliriously tired. I have vivid dreams and nightmares every time I close my eyes, and visual, auditory, and tactile hallucinations even when I don’t. I have no fine motor control in my hands when I wake up, or when I laugh, or at other times during the day, too. I lose control of my muscles and collapse with little warning when I experience strong emotions, heat, standing for medium periods of time, talking to people, and generally living life. Thanks body!
On a daily basis, I experience what a person without narcolepsy will only experience after 48-72 hours without sleep. This means that I exert a tremendous amount of energy to keep my eyes open. It also means that I frequently have difficulty putting sentences together, that taking a shower can feel like a mammoth task, that I experience waves of nausea throughout the day and that my eyes feel like they are burning whenever they’re open.
As a result of all of these symptoms, I isolated myself in recent years. While this is a super successful strategy for cutting down on the number of terrifying, uncomfortable, and humiliating collapsing (cataplexy) episodes that I have in public, it’s also…incredibly isolating. Narcolepsy is different for every single person, but I want to get my story out there so that someone like me – with an undiagnosed chronic illness – can feel hope, and a momentary reprieve from dark isolation. Thank you to the amazing people online who generously shared their journeys. Reading your stories encouraged me to trust my body and continue seeking an answer even when the professionals told me I was wrong.
I will write more about my battle with narcolepsy as the blog continues. I will also explore the impact of “just” having a diagnosis after at least 20 years of undiagnosed chronic illness.
Message me if you’d like to chat and please please please DO NOT SELF DIAGNOSE! You’re smart, you’re creative, you’re resourceful – you HAVE to be to have made it as far as you did with narcolepsy – I get it! But the way that narcolepsy and cataplexy is written about on WebMD is NOT the way I experience it. I self-diagnosed 5 years ago when someone close to me was diagnosed. After initially thinking that narcolepsy was the answer, I let it slip through my hands when I couldn’t relate to his description of sleep paralysis and cataplexy. I still don’t know if I have sleep paralysis but it turns out that my cataplexy is so bad I thought it was just a character trait (#klutz much?)! And even so, thirty percent of people with narcolepsy DON’T have cataplexy! And not everyone experiences the hypnagogic and hypnopompic hallucinations that I describe. I’ve even heard of someone who went to a neurologist, got a sleep study, and was told they don’t have narcolepsy, only to finally be diagnosed later on using the same sleep study by a specialized sleep neurologist. Unfortunately there are stories like this all over the narcolepsy community. The average time until diagnosis ranges from 10-15 years, and for me it was at least 20 years. The bottom line is that if you experience sleepiness and/or you don’t feel rested when you wake up after 6-9 hours of sleep, you could have a sleep disorder, narcolepsy or otherwise, among other things. You deserve to get help! You deserve to have your experience trusted and respected! And I hope that you can find strength to persevere through my story.
I will be updating this page frequently with resources I find and stories I collect from other folks in the narcolepsy community! I’d be thrilled if you comment with anything that you have found useful!
The Narcolepsy Princess
P.S. Find my sleep-specific blog posts here.
These are THE books on narcolepsy. Julie Flygare writes from the perspective of someone who becomes afflicted with narcolepsy in her early 20s. She is THE narcolepsy advocate and you can find her work online here. Claire Crisp is the mother of Mathilda, a young girl who tragically gets narcolepsy as a result of the H1N1 vaccine in Britain in 2010. This book follows their misdiagnosis process and is written from the perspective of a mother watching her precious daughter in decline. Claire writes online over here.
- Project Sleep: Julie Flygare’s sleep disorder advocacy non profit.
- Falling Asleep by Eleanor Wales: Elle’s website provides information for those recently diagnosed with narcolepsy, tips for managing narcolepsy (I haven’t gotten into these yet and will review them as I try them out!), infographics, more information, advocacy guides, a list of blogs written by people with narcolepsy. Everything.
- Chica Siesta: Brilliant, creative, well-written blog by an American girl with narcolepsy who travels to Spain to teach. Elaine writes about her misadventures, frustrations, and ultimately her quest to get Xyrem.